ALS United Greater New York provides local, comprehensive care and support to individuals & families affected by ALS, advances national & state advocacy, and fosters bold research initiatives. Care Services Our team of professional Care Service Coordinators provides expert advice and assistance for peopl...
ALS United Greater New York provides local, comprehensive care and support to individuals & families affected by ALS, advances national & state advocacy, and fosters bold research initiatives. Care Services Our team of professional Care Service Coordinators provides expert advice and assistance for peopl...
It gives me a sense of purpose and meaning to stay active in the ALS community, helping to advocate for awareness, treatments, and cures as well as to support others with ALS and their families. There’s nothing so meaningful to me as spending time with those who understand the ALS ...
The nonprofit has a variety of programs that serve people with ALS, as well as their families. Some of their services include equipment loans, communications centers, home visits, peer counseling, support group, and respite care services. Each year, ALS of Michigan puts on events to help ...
AimThe aim of the study was to qualitatively investigate the adolescents' need for professional support when a parent has amyotrophic lateral sclerosis (ALS) - from the adolescents' and the parents' perspectives.MethodsA total of 37 individual semi-structured single interviews with 18 families were ...
"There are individual patients who do not get some support and are desperate, so they cannot support themselves and pass away fast. "I want more people to know how desperate and helpless these patients and families are, and how much they expect scientists, biomedical companies, and medical...
In addition to itssmall size, a limitation of the study was that all families were connected to chapters of the ALS Association, so they may be different than others who do not have access to services through the organization. Also, the majority of participants were white people, so the res...
Familial ALS (FALS)runs in families.About 5% to 10% of people with amyotrophic lateral sclerosis have this type. Changes to a gene cause FALS. Parents pass the faulty gene to their children. If one parent has the gene for ALS, each of their children will have a 50% chance of getting ...
Researchers increasingly find evidence that specific genes are involved with specific types of ALS, with gene C9orf72 the most common culprit implicated in up to 40% of cases in families.12It's also associated with 6% of sporadic cases. Other factors include:13 ...
In hopes of advocating for patients and families dealing with ALS, Elkman and her husband Daniel started the ALS Genius Fund. The fund raises money for the ALS Hope Foundation to support Temple’s MDA/ALS Center of Hope and Neuromuscular Research Laboratory. The money from the fund supports ...